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Sirena

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Sirena last won the day on May 14

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About Sirena

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    Advanced Member

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    Female
  • Location
    Mid-Atlantic
  1. MTHFR Mutations

    Yes--that's the idea.
  2. We have been on for over two years now. Still helping...
  3. Group B trigger?

    YES--that's how major onset presented-oral strep B...
  4. For what its worth, I developed hyperaccussis--extreme sound sensitivity which responded to Aleve at prescription doses for 5-10 days or so to get it to calm down and if it starts to act up again, I go back on the aleve (naproxen sodium).
  5. Herx, Lyme, info please? help?

    Xylitol limeade or alkaseltzer to alkalize can help. Works fast.
  6. Help with meltdowns/mood lability

    Other detox things that have been helpful--take the edge off have been: Charcoal pills (time dosing away from other meds) Zen (glutamine & L-theanine) Alkalizing drinks (xylitol lemonade or alkaseltzer gold (DS didnt like taste) Ibuprofen around the clock
  7. Does kiddo get low grade fevers? Have you checked (igenex labs) for Babesia? Seems like that is what is in our way still...We just did IVIG again and got 4 days of bad headaches. I'm hoping that's ultimately a good sign, but his mood is off. Sirena
  8. MTHFR Mutations

    Hi Mountain Mom, The big picture is If kiddo is compound hetero for MTHFR, then avoiding regular folate "enriched" foods and vitamins while supplying methylated vit b will provide physiological support to help with the body's effort of fighting the illnesses. I think of it as a car trying to go up hill while not firing on all its cylinders. Improve the cylinder situation and its much easier to get up there. Sirena
  9. Thanks, we will see what happens. I'm just so sick of it all!
  10. DD6 had a major meltdown in school today that landed her with an in school suspension and the response to the stimulus was way out of proportion. This is on DAY 3 of 1st Grade!!! ...With LOTS of supports in place... I'm thinking that we may have to home school or hospital school or something. She's dealing with Lyme and Bartonella which I suspect was congenital but Idk. We've been treating Lyme since mid-January and she herxed horribly. Any thoughts? Any advice?
  11. Supplement substitute for IVIG

    My kiddos are taking Enteragam, which sounds like a similar product with the aim of healing the gut.
  12. Yes he can still have Bartonella even with a negative test, especially if your kiddo doesn't mount a strong immune response and thus doesn't produce the antibodies that the typical test measures. He can also still have Lyme and or Mycoplasma. These are all considered "stealth infections" and opportunistic. So if the body is stressed, they can come out of hiding and cause havoc. The first intrusive thoughts are heartbreaking. You might try supporting your ds with copying skills. There's a book/curriculum on Amazon called the Coping Cat that you or a therapist could do with him.
  13. So it's over two years now in this crazy and although we have mad improvements, we are still struggling significantly--including with aggression, bad language and intrusive thoughts, etc. ibuprofen has over this time helped to take the edge off, BUT, out ND recommended Zen which is s combo of GABA and L-theanine. An it seems to be helping tremendously --or it could be the Alinia finally kicking in...
  14. I second the suggestions of getting the Igenix testing for Lyme and co-infections (be sure to include bartonella, babesia(s), mycoplasma and clamydia pneumonia. And febrile panel if not already done. IgGs with classes and Cunningham panel. Reminds me of a neurolyme and and perhaps a reacitvated Moro reflex is part of the tic pattern. FYI, a PANDAS neuro told me in passing once that she noticed that patients that were cutters usually had Lyme, If Moro activation is part of the trigger, you/she may have a hard time figuring out but try to notice if unanticipated changes in stimuli might trigger such as a background sound (car passing by outside, door closing, someone coughing), or an unexpected touch, or change in lighting. Also--glutamate comment above was interesting to me because our doc recommended Zen, a GABA and Ltheanine combination, to help balance the glutamate. I'm still not quite believing how much it has helped our kids. You might want to try it while working on getting treatment.
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